Jacob's uveitis and JRA Journey

Jacob's diagnosis of Juvenile Rheumatoid Arthritis at
age 5 until present day. The everyday journey of living
with a child that has a chronic illness.

Tuesday, May 19, 2015

MAY 2015. It has been a year since I last updated this blog. Life goes by and time moves on. Jacob is now 16 years old. He has walked this journey of Juvenile arthritis for 11 years now. It is part of his life. As he has gotten older the challenges of being a teen with this disease has been tough. To be honest he is really sick of dealing with everything that this disease has brought. He is sick of doctor appointments. he is sick of medicine that makes him feel awful and most of all he is sick of always being in pain. I can't say I blame him. Being a teen, he is hoping to get a job soon, but he worries that he will be in pain when working. The problem with jobs for teens is that they all seem to require being on your feet for an extended time. He has intense pain in his heels when he stands for long and I am not sure he will be able to do this. We also worry that sharing his medical condition with a prospective employer will be not help his chances of getting a job.

So what is going on with his JA at the moment? Well he has completed 2 1/2 years of Remicade and Methotrexate therapy combination. His eyes are clear at the moment, off all drops. His joints on the other hand are not doing so well. He still complains of pains here and there. His back, hip, toes, fingers etc. He is supposed to be getting Remicade every four weeks , but he has not been very good with keeping the schedule. There has been some days when he was supposed to go in for his treatment and he has refused to go. Trips to the hospital have been tough for him. What kid wants to go lay in bed for hours in a hospital to receive medication so you can be a kid? After a few appointments missed and the emotional toll this has taken on him and myself, I requested to have his Remicade infusion at home. The hospital room moved to our home! This past week he had his first infusion at home. It went perfectly! All of the supplies were hand delivered the day before. I can't believe how much stuff came. The Remicade was interesting. It was in 9 small vials. It needed to be mixed with sterile water and infused over 2 1/2 hours. A very nice infusion nurse came and did his treatment. She was over for HOURS. It's still such a long process. He took his premeds, Tylenol and Hydrocortisone, then waited for the numbing cream to work, placing his IV then blood draws, then the med infusion, then finally we had to watch for a reaction for 30 minutes after the infusion. We are relieved all went well at home. Jacob will continue to have the infusions at home as long as needed every four weeks and he will continue to see the eye specialist and rheumatologist every 8 weeks.
Well that's the update for now! PLEASE PRAY FOR A CURE so that the 300,000 children living with this disease can live pain free.

Sunday, February 2, 2014

Just wanted to give a quick update. Jacob just passed his 1 year mark on Remicade. He started February 1, 2013. Seems like the year went very quickly! January 22 he had his infusion and saw the rheumatologist. All is still going very well. His joints seem to be doing okay. He did have an xray of his left knee though, just to rule out an issues. His left knee has been his main issue all along. If you remember he had a synovectomy done on it when he was just 9 years old. He complains of it here and there, but nothing major. He was sick a month ago and it did stiffen, but it has been okay since. We have not heard any news on the xray, so no news is good news. The rheumatologist moved his infusions from 6 weeks to 8 weeks. I'm all for pushing it out a little longer. If his eyes or joints become an issue, we will go back to more frequent infusions. His eye appointment is a week from Wednesday. I don't plan on hearing anything other than NO CELLS". Especially since he just had his infusion. Oh one last thing, the nurses at Tufts are AMAZING! They hit the vein on the first shot.

Friday, November 1, 2013

I haven't updated in a little while and figured that today would be a good day to share what has been going on. Jacob is coming up on 10 years since his diagnosis of arthritis. There have been many ups and downs along the way. Recently, we have been going through some downs again. Let me start with an update on his arthritis. Just a few weeks ago Jacob saw his rheumatologist and he is still
continuing to have some issues with that one knee. His left knee. There is fluid present. He had recently been complaining that it is bothering him when he stands for a long time. The rheumatologist also feels as though there is still something going on with his left hip too. It is still really stiff. She decided instead of touching the Remicade dose, that she would up his methotrexate. So a few weeks ago we upped that med. The day after we saw the rheumatologist Jacob was scheduled for his Remicade. He has been on Remicade since February and had been doing well with the infusion aside from a few times of them struggling to find the vein. That day that he went in for his scheduled infusion they were unable to get a IV line in. After quite a few pokes and Jacob in pain, we decided to try again the following week. So last week we returned to the infusion center at his eye specialist and they tried once again to start the IV. No luck again. Jacob was in tears. It is so heartbreaking for a mother to watch their child go through a procedure like this and not even have success. My heart was breaking for him. So we left for the second time without him being able to get the med that he needs so desperately. Without this medication he is in danger of losing his eye sight and not being able to walk! The doctor decided that Jacob should get a port and felt it should be soon. The longer he would be off Remicade, the more chance he could get as reaction to it when it was restarted. Jacob was very upset with this news. He did not want a port. He was adamant that he was in no way getting one. So not only is it hard for me to make this decision for my child, its even harder because he is a teenager and he feels as though he should be able to help make decisions for himself now. Over the last week I tried so hard to convince him this is for the best and it needs to be done. I cried so many tears over the last week. I decided on calling the pediatrician and speaking to him about other options. His office ended up contacting the rheumatologist. So by Wednesday morning the game plan was changing. I spoke to the rheumatologist and we decided that we would move his Remicade to be done at Tufts. They have highly skilled pediatric nurses who she assured me "were the best of the best". So if there was any hope of getting a vein they would find it.

After many phone calls between the rheumatologist, the insurance company and myself, Jacob was scheduled today to do his infusion at Tufts. I am so happy to say he was able to get the infusion and NO PORT. We had such a great experience at the hospital. The nurses were phenomenal. The took their time looking for the best veins and placed numbing cream on the areas. The let him sit for an hour before they attempted the IV. Then before they attempted his IV they brought over a machine that was held over his hand to be able to see the veins clearly. It was pretty cool to be able to see them like that. The with just one attempt the nurse got a great line in! Jacob did not even feel the stick at all. What a relief for both of us! They gave him some premeds before they started the Remicade and also took a ton of blood for blood work. Jacob had never been premed before the infusions. The benedryl knocked him right out. This made the day go by much faster for him. I have to say I do like the extra precaution to avoid an allergic reaction. So these past few extremely stressful weeks finally ended with good news. I am so very grateful for our very awesome pediatrician and rheumatologist.

Wednesday, March 20, 2013

This past week Jacob had his third infusion of Remicade. It started off very tough for him. They could not find a vein and it took multiple attempts to finally get one. To say this was heartbreaking is an understatement. Jacob was incredibly brave and sat still, patiently waiting, for them to find the vein. He was in obvious pain as they poked and poked and moved the needle around. Tears slowly ran down his face. I stood there helpless. So many thoughts ran through my mind watching my poor child go through this. No child should have to go through this to be able to see, be free of pain, and run around like the other kids. I am incredible grateful we have these meds, but it is so stinking hard watching him deal with all of this. Once the IV was finally in, he and I were very relieved. The rest of the infusion went well.

During the infusion Jacob has his eyes examined also. I am so happy to say his eyes are free of inflammation. He had been off drops for a week. His pressures were in the very high end of acceptable, but the pressure should improve now that he is off drops completely.

The next day was his 3 month appointment with his rheumatologist. Overall he feels much better and has only minimal stiffness in his knee. The doctor found some inflammation remaining in his toes, hips and knee still. She wasn't worried because he hasn't been on Remicade very long. We're going to give it some more time and see how the rest of the inflammation clears up. The important thing is he is pain free.

The next infusion will be in four weeks, and the rheumatologist said he is good until the summer.

Wednesday, January 23, 2013

Yesterday Jacob had an appointment with Dr. Foster, for the follow-up of his uveitis flare.
His eyes did look better yesterday because of the steroid drops, but we knew this was going to happen. The drops put out the fire. The problem is he cannot stay on steroid drops forever. Most vision loss with uveitis is from the overuse of the drops. They should only be used temporarily until the systemic med can maintain the remission ALONE. I knew going in to the appointment that this was probably going to be it for Humira. He had trace cells prior to restarting the med, in October. He restarted the Humira in November and the flare has only progressed. Dr. Foster has advised us that, in his opinion, the best thing to do right now is to put him on Remicade and add back in Methotrexate.
Jacob will start Remicade on February 1st. I'm hoping to start the Methotrexate this Friday.
Infusions are a new road for us. Jacob is not very happy about to change the med. He would prefer to stay on Humira.

Sunday, January 20, 2013

Recently Jacob has been complaining that his "cataract" is getting worse. He has been seeing halos around lights. He has also been complaining non-stop that his glasses are dirty, when they are not! I made an emergency appointment with our local eye doctor to have a quick look. I had a feeling that his uveitis may be flaring. Sure enough it was! Not just a few cells but many! A full blown flare. Not only does he have all the cells, but he also has something new for him. He has KP's present. I still do not know much about those except that it means the cells are sticking his lens to his corneas. The doctor called into our uveitis specialist and they wanted Jacob on dilating drops and steroid drops. Jacob is not liking being dilated. His vision is very blurry. So the big question here is why are his eyes flaring. He has been back on Humira for 2 months. I am wondering if it is not working anymore. He is still having stiffness in one of his knees. I just started him back on meloxicam also. I have heard that once certain biologics are stopped and restarted, they don't work because the body has developed antibodies to the drug. Jacob has an appointment this coming Tuesday with the uveitis specialist, we will see what the course of treatment will be!

Tuesday, December 4, 2012

Finally got in to see the Rheumatologist since jacob's arthritis flared. He has had 2 injections of Humira since I last spoke with his doctor. His knee has improved quite a bit. There was only some fluid present. It is still stiff for him, but its getting better. He still has swelling in a couple toes. It concerns me because they do not bend at one of the joints. We also found out the details of the recent hip MRI. The arthritis is only mild in both hips, and It has changed some since the last MRI a year ago, but there is no bone damage. That was great news! The mri also showed the lymphnodes in the hip are inflamed as well. The doctor said that can happen with the synovitis. So the plan is we continue the Humira and return in 3mo. Jacob did have a bunch of labs drawn so hopefully they are okay.

Thursday, November 15, 2012

Jacob is restarting Humira tomorrow. He has been off of it since May of this year and his joints are starting to flare. Right now he has a stiff, swollen knee and a recent MRI shows that he has active arthritis in both of his hips as well. After speaking with the pediatric rheumatologist on call yesterday, we were told to start the Humira immediately. Last week he went for a recheck of his eyes too and he is still having trace cells. He had been off steroid eye drops for two weeks. It would of been okay to follow his eyes a little longer, but with the joints starting to swell there is no more waiting. So back on meds he goes. We see his rheumatologist in a few weeks, so we will see how things are looking then. Hopefully the knee swelling goes down and he won't need joint injections.

Thursday, September 27, 2012

After a few years of having clear eyes, we found out yesterday that Jacob's eyes are flaring. Yesterday Jacob saw our local eye doctor for a quick check to order new glasses. Jacob had been complaining that he can't see far all of a sudden his glasses on. So I made the appointment to get a new RX and order new glasses. I was not at all expecting to hear that the doctor saw cells. He said that the right eye had 1+ cells, the left just a trace. Right after the appointment I called Dr. Foster's office and they had the doctor on call, call me right back. She advised me that we should get him into MERSI as soon as possible. They scheduled us for 7:45 AM today. After a 2 hour drive into Boston in the awful traffic, we saw Dr. Foster. He was concerned because when the tech took Jacob's vision it was very poor. He could barely read the big E with his right eye. Both eyes were significantly worse in vision. Dr. Foster asked the fellow to have him refracted (see if his vision could be corrected with another RX), dilated and a retina scan and possible angiography. Panic mode was setting in. Fortunately, after he was refracted they saw that his vision could be corrected and that the poor vision was more from the glasses needing an update than from disease. I don't understand though, because he was just there a month ago and his vision was fine. So how did it decrease that much in 4 weeks?
After the dilation, Dr. Foster looked again and he could see that the inflammation had not spread to the back of his eyes. So the treatment plan is to go on the steroid eye drops for four weeks. Starting 4x a day for the fist week, 3x a day for the second week, and so on. Then return in 6 weeks for a recheck. We are hoping the drops will kick this and that's all he will need for now. We have not discussed restarting any systemic meds yet. We now need to pray that the drops are only for this short time because he cannot be on those for an extended period due to his cataracts. The drops will worsen the cataracts. I just can't believe this is all starting again. It's been four years since he has had a uveitis flare. He has been off the Humira for four months and it's back. It is so disappointing. So do these kids ever get off meds? The pictures are Jacob at age 9 starting Humira and him yesterday.

Jacob

Uveitis info Website

Jacob's story

This blog is about my son Jacob. Jacob has Juvenile Arthritis. He was diagnosed soon after he turned 5. He is now 13 years old. His journey started with me noticing a limp and a swollen knee. We were referred to a pediatric rheumatologist soon after. Initially, Jacob just complained of his knee hurting and being stiff. He received cortisone injections in May of 2004 and was weaned off of the Naproxyn he was on, soon after. All was quiet with his arthritis until January of 2008 when his knee out of nowhere was swollen again. He had some problems with his fingers and ankles as well. He was started back on Naproxyn and scheduled for a eye exam. At his routine eye exam he was diagnosed with uveitis. Uveitis is a eye disease that is caused from Juvenile arthritis. Jacob sees a uveitis specialist in Cambridge, MA every 8 weeks. His eyes have been cell free since June 2008. He was treated with the combination of Methotrexate 17.5 mg and Humira 20mg every other week. He has not been on steroid eye drops since the springtime of 2008. Beginning in the summer of 2010 we began to taper the methotrexate. He began to take it bi-weekly. He was tapered off the med completely as of January 2011. His joints have remained relatively quiet. This past February 2011, he was found to have some stiffness/inflammation in his hip. He also continues to have a couple of swollen toes as well. He is pain free at the moment and continues to take only Humira for meds. Jacob is considered to have Extended Oligoarthritis.UPDATE: July 22, 2011 An MRI confirms arthritis in both hips. Humira 40mg will be given weekly. He has no pain in his hips. But is having pain in his heels.Update: December 2012 Back on "Humira. Eye flare up, knee swollen and MRI confirms again arthritis is active in his hips.Update: Feb 2013 Failed Humira. Joints and eyes flared and he isn't responding to Med. Started Remicade Feb. 1, 2013.